We at Narcolepsy UK are excited to share with you new research that aims to improve how we help children with narcolepsy in the future and, more importantly, how you can get involved.
Sleep scientist William “Bill” Dement, often referred to as “the father of sleep medicine”, has died at the age of 91. During his lifetime, Dement made many contributions that have transformed research into narcolepsy, he helped create the field of sleep medicine and his activism began a wider discussion about sleep and society.
COVID-19 has caused disruption to many aspects of our lives and sleep is no exception. In a recent survey carried out by researchers at King’s College London and Ipsos MORI, two thirds of people report that their sleep has got worse since lockdown in March. Around half of the population find their sleep more disturbed and just over one third of people surveyed are having more vivid dreams than normal.
Can you support a fellow person with narcolepsy in their studies?
We have been approached by a Year 12 student, with narcolepsy, who has decided to focus their Extended Project Qualification (EPQ) on evaluating the effectiveness of treatment for Type 1 narcolepsy (narcolepsy with cataplexy).
All results will be anonymous so please spare some time to answer this brief questionnaire and provide data for their very worthwhile project.
We believe that people with narcolepsy and their families and friends have the same rights to a full and rounded life as any other person without having to make this happen. The Charter is a written statement of these rights based on responses to an online survey of 302 people with narcolepsy and 149 supporters undertaken by Adelphi Research. The survey was made possible with support from Adelphi Research, Lincoln Medical Limited, The National Lottery Community Fund and UCB Pharma.
People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance. The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.
In 2016 the Neurological Alliance ran a patient experience survey, gathering over 7000 responses, from patients with neurological conditions living in England (see previous blog post). The findings were used to campaign for better services and support for people with neurological conditions.
